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Cure JM Foundation Newsletter

Cure JM News for Teens and Young Adults


In this issue:

  • Research Study Volunteers Needed
  • New Teen and Young Adult Portal
  • 2017 National Conference
 

 

VOLUNTEER FOR A CLINICAL TRIAL

Become one of the people who turn promising ideas into proven therapies that change lives!

MicroscopeYou can make an impact and contribute to the development of new therapies for Juvenile Dermatomyositis by participating in a clinical trial. We are excited to let you know about a number of experimental treatment studies that are currently enrolling patients with a diagnosis of either Juvenile Dermatomyositis or the adult form of Dermatomyositis.

Experimental Treatment Study: H.P. Acthar Gel (Cure JM Foundation)

Currently enrolling patients with Juvenile Dermatomyositis (JDM) who are 18 years of age and older, as well as patients with the adult form of Dermatomyositis. Study participants must have refractory cutaneous symptoms, meaning that skin manifestations (calcinosis, rash, etc.) do not respond to treatment of steroids plus one other medication, such as methotrexate or IVIG. The Principal Investigator is Anthony Fernandez, MD, PhD at the Cleveland Clinic. For more information on the study, go to: clinicaltrials.gov/ ct2/ show/ NCT02245841.

To enroll or for more details, contact Lisa Rittwage, BSN, RN, at (216) 444-4659 or rittwal@ccf.org.

 

AID Clinical Trial: Abatacept In Juvenile Dermatomyositis

The Abatacept clinical trial at George Washington University is currently enrolling patients with Juvenile Dermatomyositis (JDM), including adults and children who are at least 8 years old. Study participants must have moderately active disease despite treatment with prednisone and at least one other medication. Travel funds and compensation is available for study participants for five study visits after screening. To enroll or for more details, please contact Sirlekar Bullocks at sbullocks@mfa.gwu.edu or call (202) 750-0377.

More Information

 


 

New Teen & Young Adult Portal

Cure JM has launched a new Teen and Young Adult portal to address the specific needs and issues of teenagers and young adults.

This new section includes stories from teens battling JM, commonly asked questions, and tips for taking medications, socializing, self-image, school, and more.

If you would like to submit a story of your journey with JM for the website, please send to info@curejm.org.

Visit the Teen and Young Adult Portal Now

 


 

10th Annual Cure JM Conference

February 17-19, 2017 in Austin, Texas

Cure JM teens, tweens, and siblings socializing during the photography workshop at the 2016 National Conference.

Join us for the Cure JM Conference at Lakeway Resort and Spa where we will have special events for teens and young adults:

  • Teens & Young Adults: Support and Self-Advocating (JM Teens Only, 14+) 
  • Transition to Adult Care Workshop (targeted toward JM parents, JM Teens 11+ and Young Adults).
  • NEW! All Teens Art Workshop (for JM teens tweens, & siblings).
  • NEW! All Teens Multi-Media Workshop: Podcast and Videos (for JM teens, tweens, &  siblings)
  • NEW! Poetry Workshop (for JM teens, tweens, & siblings)
  • All Teens Hands-on Photography Workshop (for JM teens, tweens, & siblings)

For full conference schedule, hotel, and information visit www.curejm.org/austin

REGISTER NOW

 

 

 

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(202) 596-6267

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This website is provided for educational and informational purposes only. Cure JM is not engaged in rendering medical advice or professional services and this information should not be used for diagnosing or treating a health problem. The site author and the content providers make no representation or warranties, expressed or implied. Providing links to other websites does not imply that Cure JM endorses the information or services provided on those websites. The organizations operating those websites are solely responsible for the content found on their websites.
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